Abstract
Aim: To describe the education and employment transition experience of young adults with spina bifida (YASB) and investigate factors associated with employment. Method: We queried education and employment data from the US National Spina Bifida Patient Registry from 2009 to 2019. We applied generalized estimating equations models to analyze sociodemographic and disease-related factors associated with employment. Results: A total of 1909 participants (850 males, 1059 females) aged 18 to 26 years contributed 4379 annual visits. Nearly 84% had myelomeningocele and, at last visit, the median age was 21 years (mean 21 years 5 months, SD 2 years 10 months). A total of 41.8% had at least some post-high school education, and 23.9% were employed. In a multivariable regression model, employment was significantly associated with education level, lower extremity functional level, bowel continence, insurance, and history of non-shunt surgery. This large, national sample of YASB demonstrated low rates of post-secondary education attainment and employment and several potentially modifiable factors associated with employment. Interpretation: Specific sociodemographic, medical, and functional factors associated with employment are important for clinicians to consider when facilitating transition for YASB into adulthood. Additional research is needed to understand the impact of cognitive functioning and social determinants of health on transition success in YASB. What this paper adds: There were low education attainment and employment rates in a large sample of young adults with spina bifida. Specific sociodemographic, medical, and functional factors are associated with employment. Some employment-associated factors, such as continence and self-management skills, are modifiable.
| Original language | English (US) |
|---|---|
| Pages (from-to) | 821-830 |
| Number of pages | 10 |
| Journal | Developmental Medicine and Child Neurology |
| Volume | 65 |
| Issue number | 6 |
| DOIs | |
| State | Published - Jun 2023 |
Funding
We thank the many individuals with spina bifida and their family members who participated in this research, without whom the NSBPR would not be possible. The NSBPR has also been successful because of the contributions of the Centers for Disease Control and Prevention, the Spina Bifida Association, and all members of the NSBPR Coordinating Committee. Members of this Committee during the collection of the data reported are listed in alphabetical order and were Richard Adams, Texas Scottish Rite Hospital for Children, Dallas; Pat Beierwaltes, Children's Hospital of Michigan, Detroit; Timothy Brei, Riley Hospital for Children, Indianapolis; Robin Bowman, Ann and Robert H. Lurie Children's Hospital of Chicago, Chicago; Heidi Castillo, Cincinnati Children's Hospital Medical Center, Cincinnati and Texas Children's Hospital, Houston; James Chinarian, Children's Hospital of Michigan, Detroit; Mark Dias, Hershey Medical Center, Hershey; Brad Dicianno, University of Pittsburgh Medical Center, Pittsburgh; Nienke Dosa, Upstate Golisano Children's Hospital, Syracuse; Carlos Estrada, Boston Children's Hospital, Boston; Kurt Freeman, Oregon Health and Science University, Portland; Greg Heuer, Children's Hospital of Philadelphia, Philadelphia; David Joseph, Children's Hospital of Alabama, Birmingham; Lynne Logan, Upstate Medical University, Syracuse; Pamela Murphy, District Medical Group Children's Rehabilitative Services, Phoenix; Jacob Neufeld, Children's Hospital and Research Center at Oakland, Oakland, University of California at San Francisco Benioff Children's Hospital, San Francisco, and St. Luke's Boise Medical Center, Boise; Joseph O'Neil, Riley Hospital for Children, Indianapolis; Michael Partington, Gillette Children's Specialty Healthcare, St. Paul; Paula Peterson, Primary Children's Medical Center, Salt Lake City; Elaine Pico, Children's Hospital and Research Center at Oakland, Oakland and University of California at San Francisco Benioff Children's Hospital, San Francisco; Karen Ratliff-Schaub, Nationwide Children's Hospital, Columbus; Kathleen Sawin, Children's Hospital of Wisconsin, Milwaukee; Kathryn Smith, Children's Hospital Los Angeles, Los Angeles; Katherine Steingass, Nationwide Children's Hospital, Columbus; Stacy Tanaka, Monroe Carell Jr. Children's Hospital at Vanderbilt, Nashville; Jeffrey Thomson, Connecticut Children's Medical Center, Hartford and Shriners Hospitals for Children Springfield, Springfield; David Vandersteen, Gillette Specialty Clinics, St. Paul; William Walker, Seattle Children's Hospital, Seattle; John Wiener, Duke University Medical Center, Durham; Pamela Wilson, Children's Hospital Colorado, Denver; and Hadley Wood, Cleveland Clinic, Cleveland.
ASJC Scopus subject areas
- Pediatrics, Perinatology, and Child Health
- Developmental Neuroscience
- Clinical Neurology
